Identification of risk factors for an unsuccessful transition from pediatric to adult sickle cell disease care

Andemariam, Biree; Owarish-Gross, Jasmine; Grady, James J.; Boruchov, Donna; Thrall, Roger S.; Hagstrom, J. Nathan

doi:10.1002/pbc.24870

Cited by 77 publications

(86 citation statements)

References 11 publications

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“…The notion of a care gap includes concepts found in literature such as lapse(s) of care, 25 loss/lost to follow-up, 34,35 unsuccessful transfer or transition, [36][37][38] and cessation of follow-up. 21 …”

Section: Eligibility Criteriamentioning

confidence: 99%

Predictors of Care Gaps in Adolescents With Complex Chronic Condition Transitioning to Adulthood

Goossens

Bovijn

Gewillig³

et al. 2016

Pediatrics

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CONTEXT: Breaks in the delivery of health care (ie, [health]care gaps) occur in a large proportion of young people transitioning to adulthood. Developing interventions that prevent adolescents from dropping out of the medical system, as they leave pediatric care, requires an understanding of determinants of care gaps. OBJECTIVE:To ascertain determinants of care gaps in young people with chronic conditions as they transition to adulthood by performing a systematic literature search.DATA SOURCES: MEDLINE, CINAHL, and Embase were queried for pertinent peer-reviewed publications.STUDY SELECTION: Primary quantitative or mixed methods studies that aimed to identify determinants of care gaps in young people (aged 10-25 years) diagnosed with complex chronic conditions and written in English, French, or Dutch were selected. Ten publications satisfied these criteria. DATA EXTRACTION:For each publication, determinants of care gaps and quantitative results were extracted. Determinants were categorized into 4 groups using thematic analysis. Quantitative results were standardized, and raw data were converted into odds ratios. RESULTS:Overall, 11 risk factors and 9 protective factors for care gaps were identified. All factors were related to patient characteristics. Demographics, disease-related characteristics, health care services use, and patient health behaviors and beliefs were significant determinants of care gaps in adolescents with chronic conditions. LIMITATIONS: Large variability in study methods, statistical techniques, and study populations resulted in inconsistent study findings. CONCLUSIONS:This systematic review identified patient-related determinants of care gaps. Unfortunately, the internal and external validity of the study findings are limited, warranting future prospective, multilevel studies that address remaining knowledge gaps.

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Section: Eligibility Criteriamentioning

confidence: 99%

Predictors of Care Gaps in Adolescents With Complex Chronic Condition Transitioning to Adulthood

Goossens

Bovijn

Gewillig³

et al. 2016

Pediatrics

View full text Add to dashboard Cite

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“…44 Patient education was a common component of transition. 20,25,37,38,[41][42][43][44] Although many of these studies report positive results, the range of clinical conditions, transition care programs, and evaluation designs precludes making definitive conclusions.…”

Section: Solid Organ Transplantmentioning

confidence: 99%

“…Three studies included patients with a variety of conditions, 20,35,44 and 2 studies focused on sickle cell disease 36,41 ; the remainder of the studies had 1 clinical focus. 21,24,25,37,38,42,43 The transition care programs evaluated in these studies included use of a transition coordinator, 37,38 multidisciplinary teams to provide care jointly, 24,35,37,41,43 and a separate young adult clinic. 21 One transition intervention provided direct scheduling of visits, 36 one was a mentoring group that met over 10 months, 20 and the other used a generic 2-month intensive Internet-and text-messagebased intervention followed by a 6-month review period.…”

Section: Solid Organ Transplantmentioning

confidence: 99%

“…36,41 The remainder studied a variety of conditions including congenital adrenal hyperplasia, 21 HIV, 24 epilepsy, 25 juvenile idiopathic arthritis, 38 spina bifida, 42 cystic fibrosis, 37 or inflammatory bowel disease 43 or included a patient population comprising .1 chronic disease. 20,35,44 Twelve studies were conducted in Europe: 8 in the United Kingdom, 21,22,29,32,35,36,39,50 1 in Germany, 33 1 in Spain, 40 and 2 in 26 One study included data from the United Kingdom and Australia.…”

Section: Patients and Conditions Represented In Evaluation Studiesmentioning

confidence: 99%

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Transition Care for Children With Special Health Care Needs

et al. 2014

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WHAT'S KNOWN ON THIS SUBJECT: More children with special health care needs are surviving to adulthood and entering the adult health care system. Effective transition of care can promote continuity of developmental and age-appropriate care for these individuals. WHAT THIS STUDY ADDS:Existing studies provide modest transition care support. Methods for providing transition care warrant attention, and future research needs are wide ranging. Consistent and accepted measures of transition success are critical to establishing an adequate body of literature to affect practice. abstractBACKGROUND: Approximately 750 000 children in the United States with special health care needs will transition from pediatric to adult care annually. Fewer than half receive adequate transition care. METHODS:We had conversations with key informants representing clinicians who provide transition care, pediatric and adult providers of services for individuals with special health care needs, policy experts, and researchers; searched online sources for information about currently available programs and resources; and conducted a literature search to identify research on the effectiveness of transition programs. RESULTS:We identified 25 studies evaluating transition care programs. Most (n = 8) were conducted in populations with diabetes, with a smaller literature (n = 5) on transplant patients. We identified an additional 12 studies on a range of conditions, with no more than 2 studies on the same condition. Common components of care included use of a transition coordinator, a special clinic for young adults in transition, and provision of educational materials. CONCLUSIONS:The issue of how to provide transition care for children with special health care needs warrants further attention. Research needs are wide ranging, including both substantive and methodologic concerns. Although there is widespread agreement on the need for adequate transition programs, there is no accepted way to measure transition success. It will be essential to establish consistent goals to build an adequate body of literature to affect practice.

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“…All but 5 of the studies were carried out at single centers. The principal diseases studied were diabetes (11 studies 7, 18, 20-28 with 26 to 250 patients; 1148 overall), congenital heart disease (4 studies [29][30][31][32] with 153 to 794 patients; 1465 overall), and sickle cell disease (3 studies [33][34][35] with 18 to 83 patients; 148 overall). The other diseases studied were rheumatic diseases (131 patients in 2 studies 36,37 ), congenital adrenal hyperplasia (53 patients 6 ) and cystic fibrosis (68 patients 38 ).…”

Section: Study Designs Settings and Study Populationsmentioning

confidence: 99%

Evaluating Continuity During Transfer to Adult Care: A Systematic Review

et al. 2016

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CONTEXT: Appropriate outcomes are required to evaluate transition programs' ability to maintain care continuity during the transfer to adult care of youths with a chronic condition. OBJECTIVE:To identify the outcomes used to measure care continuity during transfer, and to analyze current evidence regarding the efficacy of transition programs.DATA SOURCES: PubMed (1948PubMed ( -2014, Web of Science (1945, Embase (1947Embase ( -2014, and the reference lists of the studies identified. STUDY SELECTION:Screening on titles and abstracts; full-text assessment by 2 reviewers independently.DATA EXTRACTION: By 2 reviewers independently, by using a Cochrane form adapted to observational studies, including bias assessment. RESULTS:Among the 23 studies retrieved, all but 5 were monocentric, 16 were cohorts (15 retrospective), 6 cross-sectional studies, and 1 randomized trial. The principal disease studied was diabetes (n = 11). We identified 24 indicators relating to 2 main aspects of continuity of care: engagement and retention in adult care. As designed, most studies probably overestimated engagement. A lack of adjustment for confounding factors was the main limitation of the few studies evaluating the efficacy of transition programs. LIMITATIONS:The assessment of bias was challenging, due to the heterogeneity and observational nature of the studies. CONCLUSIONS:This review highlights the paucity of knowledge about the efficacy of transition programs for ensuring care continuity during the transfer from pediatric to adult care. The outcomes identified are relevant and not specific to a disease. However, the prospective follow-up of patients initially recruited in pediatric care should be encouraged to limit an overestimation of care continuity.

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Identification of risk factors for an unsuccessful transition from pediatric to adult sickle cell disease care

Abstract: We have identified several risk factors for lack of transition success which will allow us to modify our transition efforts going forward to capture this highest risk subset.

Cited by 77 publications

References 11 publications

Predictors of Care Gaps in Adolescents With Complex Chronic Condition Transitioning to Adulthood

Predictors of Care Gaps in Adolescents With Complex Chronic Condition Transitioning to Adulthood

Transition Care for Children With Special Health Care Needs

Evaluating Continuity During Transfer to Adult Care: A Systematic Review

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